Evening everyone, Just thought I would update from my last post. Just had my recent test results -
TSH 7.58 (0.38-5.3) T4 9.6 (7.7-15.1) Dr has agreed to trial a low dose of thyroxine - 25mg for my “sub clinical hypothyroidism”. If my symptoms don’t improve after first prescription (2 months worth) then they will recheck bloods, otherwise it will be a 6 month trial. Finally feel like I’ve started to get somewhere, but what a battle with the doctor. However he also tested ferritin - 17 (11.0 -307) & folate 3.5 (3.1-19.9). Both seem pretty low to me but it said normal, no further action. What would be the best supplements to raise both of these? Any advice much appreciated please.
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Pascinola22
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I'd like to be pleased for you but if he's unlikely to raise your dose at the next test then you are likely to feel perhaps a little better for a short time and then worse on a child's dose.... if you are symptomatic then you aren't sub-clinical!! You will have to be ready to mention the NICE guidelines and that an increase WILL be necessary as you are not a child!
Low ferritin doesn't necessarily mean low iron so before supplementing you'd need a full iron panel to be sure, you'd be best to stick to chicken liver pate a couple of times a week in the mean time
Low folate is better off treated with a B complex as highly likely your other B's are also low?
Thorne Basic B (one large capsule), Iggenus Super B (2 small tablets) are a couple of good ones
Yes it is a small step forward but after 5 years of this it felt like a win. He insisted most of my symptoms aren’t thyroid related & would only diagnose subclinical. I printed the NICE guidelines & took them with me. He said he’d look at them online & then agreed that if my next test was also high he would agree to a trial of Levo. I am expecting a fight for the dose to be raised to be honest. I am on b12 injections. Thank you for the advice, I will try the pate & also liver I think will help. I haven’t had vit D tested in a couple of years, last result was 78.
He sounds like a total ar$e and looks like he is trying to set you up to fail 😕 lets hope he has a read up and learns a thing or two before you next have to deal with him
I'd suggest adding D3 + K2 to your supplements as everyone should really be taking it at this time of the year, ideally aiming for 100-150nmol/L if you aren't going to test I'd suggest 4000ui as a sensible maintenance dose but you can take a loading dose to get things moving up to 50,000ui a week for a couple of weeks
My thoughts exactly & I will try & see a different GP for my next appointment. Though I don’t have too high hopes of it making a difference. I will look at getting these supplements this weekend. Thank you so much for all your advice.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Oh wow, thank you. That’s my reading for the weekend. So if I can raise ferritin & folate by my next blood test it will hopefully help with a dose raise. Does this also apply to Vit D levels? I have had low iron test results in recent years but was told I’m not anaemic. Thank you for your advice. I will take it all on board once I have read through the links.
I think it was about 18 months ago. I am on b12 injections every 12 weeks. If I start vit d will it affect TSH blood tests? Think I need to look at test for this & iron levels maybe.
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help maintain B12 levels between injections
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Thank you SlowDragon, I will look for a Vit b complex. I know I will really need a dose raise after next bloods & will be following all this advice as closely as I can as I’m struggling with it all now. I need to get back on track with everything, working full time is becoming a struggle. Thank you again.
I never did understand why UK doctors are so afraid to treat hypothyroidism. Even here in the US, where there are big cutbacks in primary care going on, it's recognized that a TSH of about 1.3 is typical of people in normal health, that a large majority have levels below 2.5, and that 10 is very unusual. I felt very ill at 6.08 and just scrape by at 4.5. I take supplements, mainly Coenzyme Q10, multivitamins, selenium, and zinc, that push my TSH down into the upper part of the normal range, but they are no substitute for Synthroid, which I was allowed to take for a few years. I think that in the US and western Europe, health standards are very low, but that saves the government a lot of money. This is why I hope the US never goes on socialized medicine, but it's headed that way. And, yes, I believe that older people deserve to feel good as much as younger ones, and should also have their diseases treated properly.
Believable when bearing in mind that those with asthma, a condition which still kills 3 people every day in the uk despite advances in treatment, are not entitled to free prescriptions unless they have another condition which warrants it. Mind you, given the number of asthma sufferers in the uk it would place a massive strain on nhs finances if we were.
Crikey! Really? I must admit I was surprised when told I now qualify for free prescriptions when it seems to be treated so poorly and as such a minor illness... good thing for you now is you will qualify for all 🤗
I've mentioned this before but I think the conditions that qualify for free prescriptions need looking at again. They seem out of date and there are a lot of very odd loopholes. Asthma doesnt qualify, in spite of being potentially life threatening, epilepsy does.
And the whole all of your prescriptions are free, whether they are related to your exemption condition or not seems wasteful as well. I think it needs a complete overhaul.
Personally I think the exemption certificate system needs to be completely overhauled. As for why asthma wasn’t included, well the 1950s was when the medical profession began going through a period of almost denial about the condition - and the exemption certificates were introduced in 1952 - so I do wonder whether that has something to do with it.
Hi there: Just a quick note to mention that Levo prescriptions are not free in Canada and we struggle to get adequate thyroid treatment. I believe it has to do with the mind set of mainstream medicine. They tend to treat us as hypochondriacs and whiners. They also believe that thyroid disease is not real, especially when most thyroid sufferers are women. Very sad!
That's the peculiar thing with similarities in appalling treatment and understanding but we are given free prescriptions which you would assume suggests they do understand that it's a rather more serious illness 🤷♀️
I was put on 25mcg for the first time nearly seven weeks ago after a raised TSH for over a year (and 13 years - at least - of being very high in the reference range) because of symptoms. Like you, I was also down as being subclinical. I had my first blood test to see how things were going last week. The TSH has dropped to the lowest it’s been in the reference range in those same 13 years (3.21 - upper limit 5.5). I have an appointment to see the GP in a couple of weeks and for the moment it looks as though I’m being kept on 25mcg.
You really need to push for an increase as 3.1 is still hypo, you are aiming for 1 or below, how are your symptoms? You again are not sub clinical as low HR and high Cholesterol are Hypo symptoms
When you take a replacement thyroid hormone it needs to fully replace your requirements as just taking a little shuts down any production you may have been capable off so a small dose can be worse than none 😕
Difficult to say right now as I went down with a very nasty stomach bug early this week and spent most of Tuesday vomiting (it started about three hours after I’d taken levo that morning). As a result I’m still feeling rather fragile. Prior to that I would have said that things were feeling a little better.
Ew sorry to hear that, there seems to be a lot of it about, when you do see the GP absolutely push for the increase and act shocked if it's not forthcoming, you could mention Thyroid UK and NICE guidelines 😁
He already knows about Thyroid UK. He asked me some months ago where I was getting my information from, so I told him. 😀
To be fair to him when he was considering putting me on a trial of Levo we did have a very amicable discussion about how to proceed. I’m listed as medically complex (probably have been all my life), having more than one medical condition (3 now, one of which the evidence suggests I was born with, another I developed aged three, and now hypothyroidism) all of which could be responsible for some of the problems I’m experiencing. So it’s quite important that we get this right. For example, my understanding is that being on levo can sometimes cause issues for asthmatics. My asthma is not mild so it’s actually quite important that we proceed with caution. It’s very difficult when you have medical conditions which can impact each other. I have considered raising this topic on the AsthmaUK forum and also the one for EDS to try and get some input from there as well.
Hmm... did a quick asthma search and doesn't seem to throw up many threads so hopefully won't be a big issue, certainly your EDS has a strong Hypo link.
Absolutely, proceed with caution is always the best option, Dr's seem to think everything needs to be done in 25mcg increments but many find 12.5mcg a much smoother ride but you need the prescription increase to give you the autonomy to go at your own pace, you are the expert and can micromanage 🤗
Its also difficult when you have conditions where symptoms are similar. I have EDS, hypermobile type/ classic, hypothyroid, pernicious anemia and Fibro. Although EDS also is very similar to Fibro so might be one and the same.
I also have osteoarthritis in several joints, mostly mild, apart from right foot. The symptoms all overlap so it can be hard to know where one ends and another begins.
Thank you Emaych61. It has been a long fight to get this far. Hopefully they will listen to how you feel. Has the 25mg made any difference to your symptoms?
Some, yes. Not as tired and more alert and positive certainly, all of which is interesting given that my sleep patterns weren’t always great before I went on levo and still aren’t - hmmm. I was first found to have a raised TSH as a result of an annual health check; that same health check picked up an unusually low heart rate (bradycardia) which had not been seen before. That dropped further this year when tested (though not by much), which was before I started the levo. I do have a Garmin so I can keep track of that to some extent (though it won’t be as good as an ECG) and going by that it looks as though that has got a little better as well.
I’m due to see my GP in a couple of weeks and even if he says he’s happy I will still be pushing to get rechecked in another 6 weeks. I wouldn’t want to let it go 6 months.
I will follow the advice on here & aim for bloods in 6-8 weeks which the Dr said they will do if there’s no improvement in my symptoms. But it does concern me that if I say there are no improvements he may well stop the small dose he has given me instead of raising it. I will definitely see a different Dr next time & hope to convince them to raise the dose. Will see how this trial goes. I hope your Dr listens to how you feel rather than whether he is happy with the blood results.
Hi, I was also put on a 25mg dose by a nurse after a year and a half of being told I was borderline. After feeling increasingly worse and seeking advice on this forum I kept contacting the doctors surgery. It was a total battle but I eventually spoke to a GP who apologised and told me he had no I idea why I had only been put on 25mg because it would do absolutely nothing. So I would gain as much knowledge as you can (the information provided on here is incredible) and recontact the surgery x
You were put on it by a nurse! That’s crazy. I have a lot of advice to read through this weekend from the lovely people on here. I get the feeling from this particular Dr that he won’t even think about raising the dose until after next bloods. I aim to go more armed then. Thank you.
What a weird T4 range! 7.7 to 15.1? I think they just make these up. There are so many variations! Like I said before in a post, you can be hypothyroid in one county and euthyroid across 'the border' in another county 🙄 I don't believe these ranges are ever scientifically scrutinized and, sadly, everything depends on them...
I guess you don’t realise it’s weird until someone points it out. I have actually just checked to make sure I wrote it correctly. It does seem strange that they differ so much. I know it depends on the lab & equipment they use but it is like a lottery.
Patient patient tip. You are allowed to request repeat prescription 2 weeks before it is actually due. Make sure you do it as soon as you are allowed. This way you will slowly build up your supply of levothyroxine to cover you for adverse events like shortages.
Thank you for the tip. There is a date on the nhs app when I can next request a prescription which I think is about 10 days before it’s due, so I will set a reminder for that date.
You could always bring your request date forward one day every month 😉 I'm currently in the process of doing just this after switching Levo brands. I'd built up a nice stockpile of my previous brand.And with Christmas coming up you could probably sneak an extra request in as the surgery will probably have extra requests for all meds coming out of their ears.
Try a different app. I have 2 different apps and one of them states next date I can order and one states last issue date. Guess which one I use 😄 My surgery has never refused any requests yet.
it won’t help it’s just a starter dose you’ll need to be titrated up to a full replacement dose it’s not a top up it’s a replacement for the full whack. GP sounds utterly useless ferritin under 30 should be addressed you have no iron stores left
Thank you TSH110, I just hope next Dr I see will be more help & up the dose. I thought the Ferritin result was pretty awful but expected the ‘normal, nfa’. I will take on board all the helpful replies on here & try to raise it with diet as much as possible.
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